The Date is set
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The Date is set
Well, unless anything goes wrong in the meantime, or they just change their minds, I shall be donating to my brother on May 1st. He and I saw the surgeon yesterday and were surprised at the early date - we were planning on mid-June. I have to say that I was most impressed with the surgeon and her chat with me: concern, professionalism, confidence, listening - all the right things to make a donor happier!
The possibility of a mind change is because my brother's eGFR went back up to 17% (from 15% I think) and his potassium came down on the blood tests done AFTER we saw the surgeon, which is effectively where he was a year ago. Will they decide that, after all, he is still not too serious and defer it until he gets worse? We now have to wait for his neph appointment, but I'd like to know if anyone here was transplanted while stable at that level of eGFR?
The possibility of a mind change is because my brother's eGFR went back up to 17% (from 15% I think) and his potassium came down on the blood tests done AFTER we saw the surgeon, which is effectively where he was a year ago. Will they decide that, after all, he is still not too serious and defer it until he gets worse? We now have to wait for his neph appointment, but I'd like to know if anyone here was transplanted while stable at that level of eGFR?
Please see my blog http://diaryofakidneydonor.blogspot.co.uk/
Re: The Date is set
Matthew.
Well I have nothing but respect for you and what you are doing.
eGRF can vary up and down depending on hydration and what you have eaten, the probably see the trend heading towards going lower and have a free date for you both to get enough time to prepare. Having confidence in your surgeon and your brothers is key, my surgeon swapped and I had never met the guy who transplanted me. But I tell you what he dod a fantastic job! Where will the operation be taking place if you dont mind me asking?
Well I have nothing but respect for you and what you are doing.
eGRF can vary up and down depending on hydration and what you have eaten, the probably see the trend heading towards going lower and have a free date for you both to get enough time to prepare. Having confidence in your surgeon and your brothers is key, my surgeon swapped and I had never met the guy who transplanted me. But I tell you what he dod a fantastic job! Where will the operation be taking place if you dont mind me asking?
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.
My living donor and his family are doing all well.
==
Alports.
My living donor and his family are doing all well.
==
Alports.
Re: The Date is set
I think the normal range for transplant is between 12Gfr and 8.
This depends on age, sex, and all his other blood results. And how quickly his GFR's dropped.
You should be able to call your co ordinatior and she should be able to help.
My brother donated to me, too. What you're doing is incredible. It really is the ultimate gift.
Good luck.
This depends on age, sex, and all his other blood results. And how quickly his GFR's dropped.
You should be able to call your co ordinatior and she should be able to help.
My brother donated to me, too. What you're doing is incredible. It really is the ultimate gift.
Good luck.
Re: The Date is set
Well, my brother has seen his consultant and she is very happy with May 1st. I think my brother was nearer than he realized to dialysis; when we saw the surgeon last week, he looked quite shocked when we came out - I don't think he was expecting to be given a date, especially one so soon!
I've had more test results which I'm told are all OK, and now have a date (next Tuesday) for the HTA interview. I somehow guessed that we would go from months of doing nothing to a frantic set of appointments all in a few weeks; you'll probably all tell me that's normal!
I've had more test results which I'm told are all OK, and now have a date (next Tuesday) for the HTA interview. I somehow guessed that we would go from months of doing nothing to a frantic set of appointments all in a few weeks; you'll probably all tell me that's normal!
Please see my blog http://diaryofakidneydonor.blogspot.co.uk/
Re: The Date is set
Bravo, Matthew, you're officially a hero!
Yes, from my experience and for others on here live donor transplantation is very much a foxtrot - slow, slow, quick-quick, slow!
Also don't be surprised if the operation date changes. Mine was moved back a week at quite short notice due to surgeon availability, and others have been moved due to last minute health hiccups / scheduling conflicts. Remember this is the NHS, and whilst the care is usually excellent, the scheduling often leaves something to be desired!
Where are you having your transplant done?
Yes, from my experience and for others on here live donor transplantation is very much a foxtrot - slow, slow, quick-quick, slow!
Also don't be surprised if the operation date changes. Mine was moved back a week at quite short notice due to surgeon availability, and others have been moved due to last minute health hiccups / scheduling conflicts. Remember this is the NHS, and whilst the care is usually excellent, the scheduling often leaves something to be desired!
Where are you having your transplant done?
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
The Date is NOT set any longer
Well predicted, but I bet you didn't think you'd be right so quickly!Tibbs wrote:from my experience and for others on here live donor transplantation is very much a foxtrot - slow, slow, quick-quick, slow!
Also don't be surprised if the operation date changes.
Today they changed their mind and decided that my brother is not yet ill enough for the transplant, so it has been deferred until he gets two consecutive eGFRs below 15% . In the meantme they have found a couple more things they would like to do to me!
At least that means I can do the paving and wall in my garden this summer.
Please see my blog http://diaryofakidneydonor.blogspot.co.uk/
Re: The Date is NOT set any longer
How annoying for you and your brother! I would have thought they wouldn't want him to get more 'Ill' before they made him better, doesn't seem logical, it's like being told sorry your not ill enough for a transplant despite how you feel! Sorry to hear it and hopefully for both of you the transplant goes ahead soon! And thanks to you for willing to be a donor, it's a magnificent thing your doingMatthewC wrote:Today they changed their mind and decided that my brother is not yet ill enough for the transplant, so it has been deferred until he gets two consecutive eGFRs below 15% .
Re: The Date is set
Hi, this is an interesting post for me to read because the other day I saw the neph Dr and he said he will put me on the transplant list when my egfr gets to 20%. It's 39% at the moment but has dropped from 70 to 39 in 2 years. From reading other posts I thought 20% sounded still quite high for a transplant, but reading your post that they were going to do your brothers at 17% maybe it's more usual than I thought?
Aww, well enjoy doing your paving in your garden first!!! That's if the weather ever warms up enough to step outside for more than two minutes!!
Aww, well enjoy doing your paving in your garden first!!! That's if the weather ever warms up enough to step outside for more than two minutes!!
IgG4 systemic disease causing chronic pancreatitis, CKD, and affecting the liver.
Re: The Date is set
The thing was that he had one blood test which gave 15% eGFR and we met the surgeon and the op was planned. Then, when we left after that meeting, there was another blood test done which gave 17% and so they changed their minds as they consider that too high. It seems they want to see two consecutive readings of 15% or less, I think. He has been at 17% +/- 2% for a year, and apparently he could continue like that for another year or more. Meanwhile, I am not getting any younger!madonbrew wrote:Hi, this is an interesting post for me to read because the other day I saw the neph Dr and he said he will put me on the transplant list when my egfr gets to 20%. It's 39% at the moment but has dropped from 70 to 39 in 2 years. From reading other posts I thought 20% sounded still quite high for a transplant, but reading your post that they were going to do your brothers at 17% maybe it's more usual than I thought?
Please see my blog http://diaryofakidneydonor.blogspot.co.uk/
Re: The Date is set
Thanks for your reply Matthew! I guess they must try and keep from doing them until egfr is a bit lower then hey. It's all very confusing! It also seems to be very individualised on the surgeon and patient, so one surgeon might be more up for doing one sooner than another.
It must feel pretty stressful too getting yourself psychologically prepared then to have it all changed again. You are amazing to offer your kidney!! My dad keeps saying he'll give me one of his but he's 76 - I dunno if that makes him too old. Otherwise I'll have to wait for another donor to come along...like lots of others on here.
You take care!!
It must feel pretty stressful too getting yourself psychologically prepared then to have it all changed again. You are amazing to offer your kidney!! My dad keeps saying he'll give me one of his but he's 76 - I dunno if that makes him too old. Otherwise I'll have to wait for another donor to come along...like lots of others on here.
You take care!!
IgG4 systemic disease causing chronic pancreatitis, CKD, and affecting the liver.
The Date is set - Again
Well, the date is set again. The hospital team have acepted that my brother's "quality of life" is affected and so have agreed that the operation should be scheduled, eeven though his eGFR remains obstinately above 15% (just). I think they have accepted his evidence which was that he could not physically do the same walks on holiday in May this year which he could do the previous year, even though his eGFR had hadly changed.
So, the operations will be on October 16th, and I only have the HTA interview and another ultrasound to be done in September.
So, the operations will be on October 16th, and I only have the HTA interview and another ultrasound to be done in September.
Please see my blog http://diaryofakidneydonor.blogspot.co.uk/
Re: The Date is set
HTA is a walk in the park for both donor and recipient.....if you enjoy crying that is!
From what my donor told me about the ultrasound, well they picked which one they take. So about 15 minutes after that he saw the surgeon and they told him which one they would like to take.....he agreed about his left one, he called me and we both cried like little girls.
Again I have nothing but admiration for what you are doing.
From what my donor told me about the ultrasound, well they picked which one they take. So about 15 minutes after that he saw the surgeon and they told him which one they would like to take.....he agreed about his left one, he called me and we both cried like little girls.
Again I have nothing but admiration for what you are doing.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.
My living donor and his family are doing all well.
==
Alports.
My living donor and his family are doing all well.
==
Alports.
Re: The Date is set
Well done Matthew, you're a real hero!
They almost always take the left kidney, as the blood vessels and the ureter tend to be longer which makes the implantiation into the recipient a bit easier.
I agree about the HTA being easy - for us it was an exercise in how to cram a 5 minute meeting into 45 minutes.
They almost always take the left kidney, as the blood vessels and the ureter tend to be longer which makes the implantiation into the recipient a bit easier.
I agree about the HTA being easy - for us it was an exercise in how to cram a 5 minute meeting into 45 minutes.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Re: The Date is set
What a wonderful thing you're doing! And great u have a date now!
My dad donated to me just over a year ago, they took his left one, they said they always take left as easier to get unless it has more blood vessels attached or something, thats what they look at on the ultrasound the number of vessels. Luckily dads right one had more
What is the HTA again?!
Do keep us updated, i cant believe a year for me and dad has gone so quick, i remember a month after him saying its so strange a month ago it was in me now its in you
Tons of luck xx
My dad donated to me just over a year ago, they took his left one, they said they always take left as easier to get unless it has more blood vessels attached or something, thats what they look at on the ultrasound the number of vessels. Luckily dads right one had more
What is the HTA again?!
Do keep us updated, i cant believe a year for me and dad has gone so quick, i remember a month after him saying its so strange a month ago it was in me now its in you
Tons of luck xx
1982 - born with one imperfect kidney, no bladder
1984 - urostomy op
1990 - bladder built out of colon op
2007 - birth son, gfr drop 30% to 26%
July2011 - birth prem daughter, gfr 17%
August2011 - gfr 10%
Now - gfr 8.8% transplant from dad 29th May2012!
1984 - urostomy op
1990 - bladder built out of colon op
2007 - birth son, gfr drop 30% to 26%
July2011 - birth prem daughter, gfr 17%
August2011 - gfr 10%
Now - gfr 8.8% transplant from dad 29th May2012!
Re: The Date is set
Well, they already know that the left has one artery in and one out, but the right is far more complicated, so left it is. I can't then understand why they need another - that's not going to change, is it?!Tibbs wrote:They almost always take the left kidney, as the blood vessels and the ureter tend to be longer which makes the implantiation into the recipient a bit easier.
Please see my blog http://diaryofakidneydonor.blogspot.co.uk/